My favorite baseball team (college that is) is loosing.  I have been almost desperately poor for the past year (thank you student loans).  I will never win the lottery (mostly because I don’t buy tickets but I’m not a gambler).  I will never be considered thin or skinny (although I have lost weight in the past year and a half).  I will never be twenty and carefree again (although I’m not sure I’d really want to be that young and stupid again).

I have certain friends that I would do just about anything for.  I have others whom I love but just not as much.  Not fair?  Not equal?  No, but that’s reality.

There are patients in the clinic I work at that are my favorites.  Despite the heartbreaking death of a patient I haven’t learned my lessons.  I have a man who I literally do everything for.  I am his personal clinic person, he even has my cell phone number, my personal cell number.  It’s not fair it’s just the truth, I like him better.

Everyone older then five knows that life isn’t always fair.  Why did one of my friends get MS?  Why does my sister have epilepsy?  Why aren’t I thin, rich, and beautiful?  Why do I have Parkinson’s disease?  Why couldn’t I go to SXSW this year?  Why does life have to be so damned hard?  Why didn’t I ever win the Publisher’s Clearinghouse?  Why?

But, I have a great husband.  But I have wonderful friends.  But I have an incredibly weird and wonderful family.  But I can still walk.  But I have enough to pay all my bills on time.  But I do okay in the end.

Maybe it doesn’t have to be fair or easy.

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I am not going to Austin for South-by-Southwest this year.  A month ago I did not think that I was going to miss it but now I want to be in Texas.  I want to be wandering from show to show through endless tiny clubs that stretch for blocks downtown Austin.  I want to walk until my feet hurt and my cane hand aches.  I want to see bands that I’ve never heard of and bands that I’ve been wanting to see and bands that I love.  I want to see all the people I know who have become friends through the music that we share.

Maybe next year.

When I was twenty-one I went to the now defunct Parkinson’s Action Network conference with my mom.   She had recently been diagnosed with PD, the second generation in our family as her maternal aunt also had had PD.  The conference was held in Washington D.C. and my second cousin’s and great-uncle Paul were there because on the final night they were going to show a video of great-aunt Ginny.

I was twelve the last time my family drove out to California, for my great-grandmother’s (Nana) ninety birthday.

My great aunt was diagnosed in the late sixties or early seventies, when she was around forty-seven years old.  She was one of the first to use Sinemet, the same medication I take today.  She had an pallidtomy and swore off any more brain surgery after.  She was a fighter, a survivor.  She lived with PD for thirty plus years and my memories of her were always of an energetic, capable, laughing person.

I guess I was about twenty when Ginny died.

That evening in D.C. they showed the video of Ginny in her final months.  I was NOT prepared for what I saw.

I actually fled the conference in tears, unable to rectify the fragile elderly woman almost unable to speak or eat on her own with the charismatic, laughing woman I remembered.  I wandered the parks by the Congressional building (most likely dangerous and stupid but I survived) in the June dusk and cried.

I realize now that my great-aunt was a great survivor.  She lived for over thirty years after her diagnosis and for most of it managed to stay active, stay involved, stay happy.  She never lost her sense of humor (which was immense) even near the end of her life.  I remember my mom talking to her on the phone and laughing, always laughing.

I’d like to be the same.

 

 

This is me today, a day when my balance was so bad I almost fell at Wal-Mart; a day when my hand put up a serious fight before I managed to get my bra hooked; a day when doing the housework that needs to be one will just have to wait.

I hear people say that they are not their disease.  The more I think about it the more I think that might be the wrong way to think about things.

I have Parkinson’s disease.

It’s a part of me, it colors every decision I make and determines every movement I do or do not make.  I AM, partially, my Parkinson’s.  But I am much more than just a disease.  More than a limp or a tremor or a cane.

I am still a wife and a sister and a daughter and a friend an a coworker.  I still love music and reading and macaroni and cheese.  Maybe I cannot ride a bike but I can Wii bowl and am game to walk anywhere if you are willing to go a bit slower that normal.  Who I was six years ago, pre-diagnosis, is still who I am now, essentially.  I just take more medication now and move at a slower pace.

I know the exact date of my diagnoses, July 24, 2006.  I suspect all PD and MS patients are the same.  It’s the day you are told that your life will never be the same again.  It’s the day that you come, eventually, to accept as the day you added to the list of who or what you are.  I am a Parkinson’s patient.  I have Parkinson’s disease.  It IS part of who I am now.

I know that for the newly diagnosed there is a tendency to deny, to search for another answer.  Despair can swallow you whole.  I think that it is important to remember that you are still you.  You still love the same people, like the same ice cream, live in the same house, drive the same car.  You are still you, just with a new addition.

So I accept that I am Parkinson’s disease.  I hope that I can be a face for my disease that proves that the scary doesn’t have to be so scary.  I hope that someone out there might read this and think “she’s right, I am still me”.  I hope that other’s will think that their disease does not have to define who they are but be a part of the whole person.

 

I was always a talker.  I was the kind of person who would talk to complete strangers while waiting in line.  I was in the theater, my voice was made for projecting without strain.  I was an excellent public speaker, no amount of people bothered me.  If pressed into it, I was even willing to sing publicly despite never being the best singer in my family.

Then I was diagnosed with Parkinson’s disease.

PD patients often build up too much saliva which causes choking,  drooling, and slurring speech.  I also, when tired or stressed, tend to stutter which with along with the slurring makes me sound like a drunk at worst and an idiot at best.

So I slowly have began to talk less and less in the past five years.  Social situations have become slightly unnerving.  People I don’t know or don’t know very well tend to be intimidating and flustering.  Those times that I manage to get all my words out clearly I’m aware that the people I’m talking to are not really listening to me, instead they are just wondering about my cane and I begin to think about leaving or at least hiding.

I never, ever, talk on the phone unless I have too.  I’d rather text message.

I even hide from Facebook.  Sometimes other people’s common-place problems just infuriate me.  I reach a point where I just don’t care anymore if you have a cold or can’t afford to go on vacation this year or are getting your third divorce.  I have better problems.

PD is caused by the brain not producing enough dopamine.  Dopamine is the chemical is your brain that makes to feel happy.  PD patients all end up on anti-depressants to combat the loss of the dopamine but I am still resisting.  I am already on enough medication for a 34 year old.  I just need to take breaks every once in a while.

So, with that being said…I’m back.

 

Today is Valentine’s Day.  Do what you will with that.  It’s not that I’m not in love, I am!  I have the greatest husband on this planet and maybe the next too.  I just used to work for a florist for a couple V-day’s and I saw way too much last minute, no thought required, my wife/girlfriend/fiancee will kill me if she realizes that I forgot about this stupid holiday, shoppers to ever really feel much warmth towards a dozen red roses and a box of chocolates.  My husband bought me a pair of black, low-top Converse for V-day a couple years ago…best gift ever.

My sister (the youngest) and I are leaving work Thursday and driving the three hours to Fayetteville to see the Old 97s at George’s Majestic Lounge.  I’ve seen the 97s once before about five years ago in Memphis.  They kill live.  Definitely worth the drive since I’m off Friday anyway.

Saturday 13 Ghosts and Vulture Whale are playing at the White Water Tavern.  I will also be at this show.  I don’t venture out to two shows in the same week often.  Being of very little balance, I generally hesitate to wear myself down like that.  Luckily, the people at the White Water know me well and tend to take care of me.

Happy Valentine’s Day…

I grew up just outside of Denver in Littleton, CO.  Some of my favorite memories are of watching the first snow flakes fall from the late autumn sky, or sledding on our steep street, or building snow forts for epic snowball fights.

When I was thirteen my family moved to Arkansas and suddenly snow became a rare event.  I learned to love Arkansas’ fickle weather but it took time.  No, I’m not a huge fan of July, August, and early September and the searing heat and oppressive humidity.  But, oh, how glorious are October and November with crisp air and bright blue skies and trees like flames.  And March and April and May with sunny, warm skies and green grass and the wild buttercups blooming in every yard and roadside.  Sure, with that sunny warmth we get storms but there is beauty in the boiling clouds and angry lightning too.

Still, I’ve always missed the snow and welcomed the few true snowstorms we did get here.  Well, until last year.  Last year we got more snow than was normal and I found out quickly that ice and slippery snow did not work well with my growing dependence on a cane.   Add slower reflexes and I was no longer quite the driver on snow that I used to be.  Determined not to be stuck inside, watching the snow from the warmth and safety of the inside, I used my youngest sister as a walker and plowed into the cold fun of the falling snow.

We just had (for Arkansas) a major snow storm.  Eight inches of snow fell where I live and when your town has no actual snow plows and you don’t own a snow shovel that’s a lot of snow to try and slip and slide through.  Me and my husband went out for a few minutes during which I ended up falling and rolling around in the snow, unable to get my feet under me ever with my husband’s help.  I finally came back inside cold and wet and disgusted.  I guess I’m stuck with watching from the windows.

I wonder what I would do if I lived somewhere colder.  Would I spend the time looking for the perfect snow boots?  Can such a pair possibly exist?  Would I become a hermit during the winter months?  I think of the trip to Chicago my husband and I took just after we got married when we talked about moving up there.  Would the public transport have made it easier or harder for me?  What would I have done when there was two feet of snow or the wind chill was -5 and my only speed is limp?

Then again, this spring when one of our famous torrential thunderstorms catches me half-way though a parking lot and everyone else is running for cover and I’m limping along at my usual slow speed is there really any difference?  I guess it’s just what you are used to.

What? Everyone does not keep a Halloween wind-chime hanging on their back porch? I've always found the bats fitting around here.

 

 

I have never been overly brave.  I was never one to run with scissors or  dive into the shallow end.  I’ve never been one to speed in my car or run stoplights late at night.  And now, post PD diagnosis, I am even lees likely to try anything new or daring.  My world is scary enough since some days even walking is an adventure, why try to go out of my way to see more scary?

That being said, I allowed my youngest sister to talk me into cutting my hair.  All of it.  It is the bravest thing I have done in years.  I went from this:

To this:

Yeah, I know.  Completely insane, right?  I love it too!  What a surprise.  Maybe I’ll try skydiving next…

I have changed my hours at work from the normal Monday through Friday eight hour shifts to M-Th ten hour days.  I leave my house about six in the morning and get back home at 6:45 ish at night.  Long day, right?

My super-great husband is worried that I will be too tired by the end of the week with the longer shifts.  I could be.  It’s certainly a consideration because stress and fatigue are major factors in my Parkinson’s disease.  Too much stress or too much fatigue and my symptoms revolt, my leg stops working, my speech starts to slur and stutter, and I become mostly useless to everyone.

My bosses here where I work, a university hospital, are great to me.  They know that I may not be able to sustain the 4-10’s.  We are on a trial basis for now.  If it gets to be to stressful or to tiring I will go back to working five days a week.

I do like the idea of having Friday’s off.  I like the idea of saving money on gas each month.  So if the evenings get a little long I’m going to console myself with those thoughts for a while.

 

It’s that dreaded time of year.  College football is over and college baseball is six long weeks away.  What is a person to do with their extra time?  There are books, movies, the internet, and I guess you could spend time with your family if you got really desperate.  I choose hockey.

I don’t have a favorite team, I sort of root for all the Canadians and ice-bound US states.  I believe that there should not be hockey teams where playing outdoors, at some point in the season, would not be possible.  Goodbye Phoenix, Florida, Carolina, Dallas, and the ridiculously named Ducks.

I’ve talked on my blog about it before but I have a bit of blood-lust when it comes to sports.  I love bench-clearing brawls in baseball.  I love seeing gloves hit the ice.  I don’t care for wrestling or MMA, I prefer to get my fighting in a slightly more organic venue.

I love that hockey players are the ultimate non-whiners.  Broke a tooth when you got hit by a puck?  Pull it out with your bare hands and keep skating.  Broken nose from a high stick?  As long as you can still see, keep skating.  Pissed off about that guy who just checked your star player again?  Drop your gloves and beat him up a bit.

So, it’s hockey for the next six to ten weeks for me.  No whining!

 

Quotes-

"And music will save your life. It's religion. Treat it that way." -Bob Lefsetz
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."A poet who reads his verse in public may have other nasty habits." -Lazarus Long from Robert Heinlein's "Time Enough For Love"

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